Errol Milner Clifford 2006-2009
Errol Milner Clifford was born with a significant heart defect and a cognitive disability that prevented him from walking or talking. As we grieved the child we had anticipated, Errol’s full-bodied smile and irrepressible laugh turned our sorrow into joy, and taught us that many of the best things in life are unexpected. Inspired by Errol’s delightful spirit, friends, family, and neighbors rallied to support our family’s significant emotional, physical, and financial needs, through countless acts of selfless generosity. When Errol’s courageous heart finally failed him on December 23, 2009 we were left numb with grief. In these dark hours we listen hopefully for the echoes of Errol’s brilliant laugh. This blog is the story (starting from present and working back to Errol's birth) of the life and times of the amazing Errol Clifford.
Tuesday, May 27, 2008
I started the computer today and put Errol about a foot away from the screen. I opened our digital photographs and scrolled through them. I showed Errol a picture of himself. He brightened. “That’s Errol!” I said, then magnified the image. Errol cracked up. I showed Errol a picture of him on my shoulders. He thought it was the funniest thing ever, and laughed and laughed. Then I showed him pictures of Owen, Cary, and more of himself. The pictures of Owen were his favorites and he doubled over as his little belly shook with laughter. Errol is, hands down, the happiest person I’ve ever met.
I heard an amazing presentation today from a conference called TED. TED is collection of brilliant speakers who help us think more deeply about happiness, creativity, poverty, globalization, and many other topics. None of the many fantastic speeches I’ve heard have been as arresting as a talk I heard today by Jill Bolte Taylor who talked about how wonders of the brain.
Our brain has two hemispheres. The right side of our brain processes all the multitude of sensations we are experience every moment. The taste of an apple, the sound of a car horn, the smell of baking bread. It doesn’t recognize ourselves as separate from sensations. The left hemisphere organizes all the information we take in and puts it into a context. It is aware of the self, which we see as separate from all our sensations. The left hemisphere always has its eye on the past and future. The speaker is a brain researcher who lost the left side of her brain to a stroke. Although the stroke was debilitating, it let her slip into a beautiful world of sensations and connection and rid her of all the stress, guilt, anxiety, and planning of her 37 years. She was awash in all the senses of the moment and couldn’t distinguish between past and present; herself and others. It was, to her, nirvana. Her experience led me to immediately think about my beautiful Errol.
I don’t have a name for Errol’s condition, and I don’t know exactly how it effects his brain, but it’s clear to me that Errol operates almost exclusively out of his right hemisphere, and lives a life that is almost completely in the moment. His life is of a near constant state of bliss. He loves the wind, the sight of his little hands, the pig snorts that I make for him, vanilla yogurt, any music, Owen jumping off his dresser, riding on my shoulders or in the car with the windows down. All kids are a little like that, and the older we get, the more we drift to the left. Errol is a constant pull back to the right and the joy that is always there waiting to be tasted.
Thursday, May 22, 2008
Errol is as near sighted as a bat. He can see less than one foot from his face, which explains why he pulls everything you hand him right up in front of his eyes. Poor little devil.
We went to see his pediatric ophthalmologist (doctor # 11) in Greensboro.
They numbed his eyes, dilated his pupils, and then twenty minutes later flashed lights at him to discover that (surprise, surprise) he is severely near sighted. While not technically blind, Errol can’t see past his nose. No more driving for Errol!
If the eyes are the windows on the soul, what does that say about someone who is near sighted?
And so now, to make matters worse, the little man is going to get eyeglasses. He’s not exactly thrilled, and judging by the way he manhandled the sunglasses they gave him for his dilated pupils, his new lenses aren’t going to stay on his head very long. Can anyone say duct tape?
The little man may not have the highest IQ in the world, but boy can he grab. He loves to grab toys, paper, food, and really just about anything he sees (or doesn’t), but most of all he loves to grab hair. If Owen so much as passes within two feet of Errol his hair is history. In fact, Errol likes hair so much that he pulls his own (he has a sweet little bald spot on the side of his head – how’s that for tenacity!) I’m worried about what Errol’s going to do to those glasses. Let’s hope they aren’t made out of hair.
As if Errol didn’t already have enough problems, now we get to add near blindness to the list. But Errol never complains (last week they took his blood and he just smiled), so I don’t plan to fuss either. I know it sounds crazy – and I am very grateful that I don’t suffer from blindness or physical disabilities – but every day, as I watch my sweet son go through life, I find myself wishing I could be more like Errol.
Great news! The doctors have given us a reprieve, and Errol will not be having his third open heart surgery until the summer of 2009. We are so excited. We feel like a huge weight has been lifted from our shoulders (and hearts). Of course, Errol will still have to go through the surgery, but this delay will let Errol get a year stronger and will allow us to enjoy this summer that we have been dreading. Can anyone say beach? As for next summer...we just won’t think about that right now (denial makes the world go round!) Thanks for all the thoughts and well wishes as we approached this dreaded milestone (we’ll take a rain check.) I think this is going to be the best summer ever.
Monday, May 19, 2008
Errol's favorite person in the whole world is his brother, Owen. Whatever Owen does makes Errol happy. A kiss, a hug, or a high five makes Errol smile, and a jump from the dresser makes Errol erupt into howls of laughter. The other day we went to the neighborhood park. Errol, Owen and our neighbor Benjamin alternated trips down the slide, and for about fifteen minutes straight, Errol was in a state of unbridled joy and laughter. Errol would just get finished with laughing at his own trip down the slide (in loving arms, of course) when Owen or Benjamin would slide past us, leaving Errol in another hysterical fit of glee. Errol has the most beautiful laugh. It starts as a - he-he-he, to himself (like he's in on a secret) then the anticipation builds and his laugh spills out into a head bobbing - gaaaaaaah ha ha ha, and finally (if things are really funny) builds into a deep and uproarious belly laugh - oh ho ho ho. It's not only sliding that makes Errol laugh. Sometimes it's a trip on my shoulders, or Owen dancing, or some unidentifiable occurrence that leaves him in stitches. It's hard to hear Errol laugh and not be infected by it. If you are ever blue, come slide with us and put yourself in a happy state.
Sunday, May 18, 2008
Errol loves to paint. He started painting a few weeks ago at school. His teacher, Karen, put Errol in his seat, slid a tray up to him, dunked his little hands in paint, and let him go to town, painting on the tray. Errol loves it. He loves the feeling of the paint, the action of painting, and the color of his designs. Above all, I believe, Errol loves the act of creation. Until now, he hasn’t had the concentration, coordination, or inclination to make things, and he’s mostly reacted to the world. This act of painting is one of his first deliberate actions. Whatever his motivation, our little Brice Marden is thoroughly enjoying himself as he makes his beautiful paintings.
Wednesday, May 07, 2008
People don’t generally ask a whole lot of questions. Many folks with disabled kids told us that when Errol turned two the questions would fly. In March, Errol turned two, and most people remained pretty quiet (at least to us.) A couple of weeks ago, that all changed.
Because of some glitch in the enigma wrapped inside a riddle that is the American health care system, the wheelchair Errol was supposed to get in September has still not arrived. !#@$!%*@!%@&!! Over spring break, Errol’s school lent us his school wheelchair for a week, and Errol immediately went from being a big kid in a stroller to being disabled. The questions (verbalized and not) started immediately. “What’s that chair he’s in?” “Can he not walk?” The ubiquitous, “How old is he?” And, of course, “why are you wearing lederhosen in the dance club, Mr. Milner?” Errol is nonplused about all the fanfare, and just smiles back at his admirers. He is, of course, exactly the same boy he was pre-wheelchair, but people’s responses are very different (you’d think they’d never seen a naked kid with a beer in his hand before!!) And, despite my son’s equanimity, all the attention makes me a bit defensive. But new things always attract people’s attention, and if the questions lead to a widening of understanding and to a few folks knowing Errol, the universe will be all the better for it.